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"If I didn't die at that time, anything" can happen to me at that time
It was not enough that his youngest daughter was discovered a disease of the so -called ‘rare’ (Takayasu arteritis) at four years.Only one month after that mazazo, his other daughter, seven, was diagnosed with type I diabetes mellitus. “It was a tremendous shock.We only felt desolation and total helplessness, ”confesses Iliana Capllock, a mother who has managed to turn the tortilla," to take strength from where there are no "and turn her very hard experience in a beautiful book entitled We can have hope (Editorial Loquenoexists).
It is a collective work written by her, her husband, by the doctor who treats her daughters and, simulates by the girls themselves.
Andrea and Claudia are now 11 and 8 years old, respectively, and have accepted their diseases."We have tried to treat it with all possible normality, making them see that you have to live with it and trying to enhance their qualities," says Iliana in an interview with El Confidencial.
In addition, it is very important to "share knowledge" and make public the situation of the little ones to facilitate their socialization.“In their school everyone knows what happens to them and, therefore, on their classmates' birthdays, mothers ask me what Andrea can eat or, as they know that Claudia cannot jump in elastic beds, they look for other types of games inthose who can participate. ”
Thanks to these measures, to the help of doctors and the support of the whole family, girls now "are happy," says their mother.They make a life as normal as they can (despite the "Molotov Cocktail of Medicines" that they have to consume) and even go to sleep at their grandparents' home even if their parents cost a night for a night."They are very aware of what happens to them and when one is worse, the other takes care of her," says his mother.
Relief after uncertainty
Although it is not easy to attend to this type of disease, especially to Takayasu's arteritis.Andrea has traveled only a few months ago to the United States to be operated there because the blood no longer reached the feet and in Spain there was no experience in the intervention it required.And he has gone from wheelchair to even run.But when the symptoms began, nobody knew where those stains came from the legs, that limp.Incexed symptoms to which doctors did not find an explanation until after almost a year of pilgrimage for all kinds of consultations.
“At first we felt relief when I had what I had, by named.But then we had many anxiety about the ignorance of the disease.There is no treatment for her, ”recalls Iliana.
Only a few months after that the older sister threw weight alarmingly, she pee on the bed and presented strange symptoms."We thought it would be for stress, because of the situation at home, but in one of the visits with the little girl I asked doctors to do some analysis and discovered that it was diabetic," explains the mother.
"If I didn't die at that time, anything can happen to me."Iliana takes strength even for humor when remembering that dramatic moment.
Adaptation time
From then on her and Javier, her husband, turned her home into a hospital.And both had to face the new situation with the tools they had: to adapt as a soup, endure the tears and serve their daughters.
“We have all had an acceptance time that between Javier and I has been very different, which has caused tensions and has made us pass a stageVery difficult as a couple, ”says Iliana.Fortunately, that phase has passed and the whole family, far from recreating in pain, has managed to redirect it positively, turn it into learning and, above, write a book that speaks of hope.
"We are clear that we must move forward and that, in addition, this can help many other families," says Iliana, for whom, in addition, writing this book has meant a true therapy.So much so that in the text it offers ten tips, that we reproduce here, for those who face a chronic disease:
1st. Never lose hope .Do not give up.
2nd. Do not blame yourself for your children's disease , you will lose time for what is really important: help them and be there for them.
3rd. Listen carefully to the health personnel that attend you , try to dialogue and always ask all doubts and try to reach the maximum understanding about what the disease entails and its possible solutions.And he understands that doctors need their time to inform and train in these diseases that have only heard “a bibliographic reference” throughout their career.
4th. Do not fall into self -pity and ask for help , either to a professional, to the health team, family or friends.It is a very difficult and hard situation and nobody is prepared to see a child suffer.However, we must move forward without regretting what you no longer have, you have to learn to live with the new situation and get the positive of it and each of those who live it.
5th. avoids the compassion of society and seeks its understanding so that the integration of the child in their social environment is easier .It has been a great help to go to an association of people with disabilities, since there I have found families in circumstances similar to ours with which to share experiences and feel surrounded.
6th. Share the information about the disease with the people who live with your child at school, with the parents of friends, with your relatives, etc.And try not to overproteger your child in excess.Let him do all possible activities and do not treat him as a patient, but as a person with his skills and abilities, who also live with a disease.Let's not put the limits, to find them.
7th. Contrasts the information you get about the disease by external sources with your doctors and health professionals, before becoming illusions about "miraculous cures" or depressed with too cruel information.
8º. Try looking for rest supporting you in family or friends .It is essential to disconnect, recharge batteries and have "own life", even if only very occasionally.In the end we will all appreciate it, especially our children.
9º cries and evolvate .It is very necessary, although you must do it in its fair measure.The danger is to fall into despair or discouragement.You have to stop, breathe, think and act.
10º Be grateful to the people who help you daily .A beautiful word from time to time makes us all happy, who receives it and who says it with the heart.
